The Mukka Family. Here’s our story…our grandma June had HD she passed away when we were really little, many years ago. One day as we pull up the driveway there was an ambulance and some police cars near the shop. My mom told us that uncle Frankie died. He shot himself; he had HD and was not a very happy man. Then Karli came along and started having a hard time doing a lot of normal kid things. It took two years of
going to drs before we even knew what JHD was. When we found out that Karli could have this, it meant daddy could be sick to. Later they both tested positive. Karli became the poster child of HD awareness. Her add was in all kinds of magazines such as Time, News week, this old house and 30 others! She was famous to she told Billy Aaron Brown big Hollywood actor. A few years later Jacey became symptomatic and decided to test. She to tested positive for JHD. Then 2 years later I tested and next thing you know the drs were saying she is positive to. Jacey and I attended a national convention for HD and found out
that research was geared mainly for adults with HD,and because reasons we didnt understand,it excluded most of the Juvenile popullation of this disease. That inspired us to make a change and get people involved to help raise money so that drs and researchers could start a fund to help find help and understanding for the kids. After all children are the future generation. Unfortunately Karli and my dad Karl just passed away. Karli fought through many seizures, nurses, hospital visits and kicked many boys with stinky finger. She passed away on Feb 16, 2010. My dad Karl passed away on April 29, 2010 peacefully in his bed at the nursing home. They are now in heaven together, looking down on all their friends and family. Doing what they do best, playing tricks on us.
Through all the bad there has been some good make-a-wish granted us all wishes. We have the best caregivers, my mom Jane who was always there by Karli’s side day or night (she will continue to do the same with Jacey and Myself) and our sister Karisa who is not at risk but of course would do anything possible to help us when we need it. They ARE the strongest of us all, because they have to survive it all. I’m never going to forget the day my mom told us that we weren’t an unlucky family; we just won the genetic lottery. I think what helps us get through it all is we try to end each day in a smile, make good out weigh the bad, and constantly remind one another that we are here for each other.